Thursday, February 23, 2017

The Faces of Alzheimer's

Take a look at these pictures of my mom. 
In which photos does she have Alzheimer's?

What does Alzheimer's look like? Think it is easy to tell? Think again.

Alzheimer's disease can turn the innocent faces of our loved ones into the masters of disguise. Over time they learn to accommodate for their shortcomings. They make excuses or simply learn to do simple tasks another way. The way they once lived, a life of confidence and independence, is slipping through their fingers. At some point the reality of the effects of the disease can no longer be ignored by anyone. Sure, it is scary.  They are scared. You are scared and rightly so.

Alzheimer’s disease is not kind.  There is no cure. There are no survivors. And the disease creates an alarming new reality for the victim and caregivers, which is confusing for all. At first, they are lucid enough to know, at times, that what they are saying or doing is not in line with how they once lived their life. They wander, lose items, and get lost. Names, dates, appointments and even their own personal story and history is forgotten.  The ones they love the most will be forgotten or confused with someone else. And it gets progressively worse over time. Sometimes they go quickly, while others, like my mom who has been diagnosed with the disease for over a decade, must suffer year after year. 

We all suffer because of Alzheimer’s disease.

Alzheimer’s disease takes a toll on family members, friends and community members. We all must decide what roll we are willing to play in the victim’s life.  Some cannot handle the pain of seeing a loved one suffer from the disease and simply make the choice to no longer show up. It may seem cruel, but I have seen it happen. I have seen a mom of many children never have a visitor- not a family member, not a friend or church member, no one from her past life came to visit. Others are the complete polar opposite. They drop everything in their lives to take care of a loved one -24 hours a day, every day.

I am considered to be caregiver for my mom, despite the fact that she lives in a facility with 24-hour care. I am her Power of Attorney; I still do her laundry for her, buy her clothes and toiletries and make sure she gets her haircut. I visit my mom regularly and make sure she gets the care she deserves. Most importantly, I show my mom unconditional love.

The polarity of feelings that occur while loving and taking care of my mom is exhausting. The highs of surprising moments of clarity I experience with my mom can quickly be erased by the devastation of a single moment- a moment of my own clarity on the realities of the disease. Highs and lows, pain and laughter, acceptance and denial, happiness and anger- these are my day to day reality.

Many of you may be in the same boat I am, but for those who are not, you cannot comprehend what it is like to love an Alzheimer’s victim. Let me help paint a picture of what it is like. Take a moment to think of one of the people in your life who you love the most. Now, conjure up memories you have had with them- trips, quiet moments, the ways they loved you, their smile and laughter, inside jokes, their idiosyncrasies and favorites meals and hangouts. Now slowly take all of that from them, little by little, bit by bit. Make sure you steal parts of their life at random. Place them in a new reality. Let their new reality consist of hallucinations, personality changes, confusion, and anger and top it off with a whole group of people taking away every bit of their independence. Make sure everyone tells them what they are supposed to think and do. If you aren’t upset enough about seeing your loved one suffer through their new hell on earth, you get to navigate it right along side then. And there’s a catch. They are no longer the person you once knew, so understanding how to help console them and support them on their journey is going to be a guessing game. At some point your loved one no longer understands their situation, but you do. You get to understand and experience it all.

But we aren’t done yet! Now we will focus on you. Can you imagine what it feels like for you now that your loved one no longer knows your name or even recognizes you? Take the person who loved to read and see them struggle to make sense of words or physically see the words on the page. See the individual who has a bachelors and masters degree, who once thought deeply, loved art and theatre and worked in an academic environment and now imagine them, slumped over in a wheelchair unable to do anything for themselves. Remember the bright eyed, beautiful person who made sure you knew how much you were loved with soft verses sung in your ear, hugs and kisses offered unconditionally, and cheers from the bleachers, but then that person mutates into someone who stares at you blankly, trying to fit you into their new reality of incoherent babbling and hallucinations of animals, people and things you cannot see, hear or understand. The strong, vivacious, healthy person you knew turns into a weak, hobbled individual who instead of a enjoying a hearty meal and an evening walk with the neighbor must now endure pureed food and a day filled with sitting in a wheelchair talking with their invisible friends.

The cruelty of Alzheimer’s disease does not discriminate. It will latch on to men, women, scholars, farmers, and any individual of any religion, ethnicity, race and socioeconomic class. Once the jaws of the disease latch on, they never let go.

Every 66 seconds an individual in the United States develops Alzheimer’s disease. 

Alzheimer’s is not just a disease, it’s an epidemic, one I live with, we all live with, every single day until we find a cure.

So, are you still wondering in which pictures my mom had Alzheimer's disease?

All of them.

Monday, September 12, 2016

Life With DJ

It has been a year since we lost DJ. People say that when you lose someone you love it gets easier as time goes by, but I’m not so sure I agree.

It isn’t any easier seeing the pain and sadness in Jake’s eyes when we talk about DJ. He still misses his best friend deeply. At times, his silence and the drop of his head is enough to let me know it hasn’t gotten easier for him. Watching as his chin drops to his chest is like his own moment of silence to honor DJ, his missing soul mate of a friend. I can see the pain in his heart is deep and his emotions are raw, still tender to the touch.

When special days and outings have emerged throughout the year, times which had always been spent with DJ, it is no easier. To choose someone else to go with Jake, to fill that space of taking another buddy along, feels like we are cheating on DJ. It still feels like DJ should be there. To celebrate special days still feels somewhat inauthentic because the celebration doesn’t seem complete without Jake’s best friend there. 

But still, it’s not all tears and pain. At times I find myself smiling because something triggers my memory of DJ’s infectious smile or the games he and Jake would play. I can still picture the boys asleep, their tiny bodies in Jake’s big bed, quietly dreaming of  Pokemon, Legos and Nemo. And it makes me happy to know and remember his idiosyncrasies that simply made DJ…DJ.

Not knowing what feelings will emerge, we still tell stories about times with DJ, remembering movies they loved to watch together, trivial things they argued over, DJ’s small list of foods he would eat or his token sweatpants that he always wore. We can laugh, smile and rejoice in those special memories, knowing how lucky we were to be a part of them. We all feel so blessed to have known DJ, to have spent time with a kid who was charismatic, intelligent, head strong, respectful, polite and fun to be with. Memories of DJ’s quick wit and timely and well-deserved come backs to Jason’s constant (harmless) teasing always make me laugh out loud. 

One of the many wonderful things about DJ and Jake’s relationship was how DJ allowed Jake to be himself and vice versa. There wasn’t pressure to grow up and act older than they were. No judgment, just being you was enough. Those two loved playing Legos, even after other kids had given them up. Talk was about Nerf guns, sword fights, video game characters and whatever else they happened to be into at the time. They didn’t care what others thought because together Jake and DJ could just be. There was never a show with DJ. He was always authentically himself, which is so very refreshing, no matter what the age.

Just as he did in life, DJ still makes his presence known to us. DJ comes to us in dreams, brings us praying mantis (sometimes in the strangest places), spectacular orange sunsets and shifts the wind and the path of balloons. He has even been known to give signal after signal, practically screaming the signs at us until we finally listened in order to keep a little boy safe.

So, my point is, I don’t think things get easier when dealing with the loss of DJ- easier isn’t the right word. Things are just different. Life is different. We are simply learning how to deal with DJ not being here anymore, day by day, moment by moment. And however we handle a situation at the moment is how we handle it and that’s ok. Through this tragedy, we have learned there is no right way to grieve and time limits don’t apply here. There is no certain time limit to stop feeling a certain way, to stop crying at the mention of his name, to be able to talk about him without that lump in your throat. There is a special place in our hearts for DJ, which will never be filled, can’t be filled. That spot in our hearts is his and always will be.

I still have a hard time believing I won’t ever see DJ at my door again. There is no other way to describe it other than it simply doesn’t seem right. My heart hurts knowing the pain we all feel because he is gone. DJ is gone, but there is no way that kid will ever be forgotten. DJ touched our lives in so many ways. Whether he made you laugh, helped you in school, built Legos with you, played video games with you, hung out with you at R.O.C.K. or Boy Scouts, walked past you in the hall, let you give him a piggy back ride or he was your best friend, brother or son, you’ll remember him. From his dogs, Ross and Rachel, who would snuggle with him, to the families who didn’t know him in life, but were touched by his story, we all are better because of knowing DJ.

The story of DJ’s death hits home with us as parents and caretakers because we know it could have just as easily been us in that situation. It scares us, brings us to our knees and reminds us how fleeting life can be. But the story of DJ’s life is also a strong reminder of the importance of authenticity, patience, friendship, acceptance, joy and love.

In his twelve years with us, DJ taught us some important lessons worth mentioning. Do not waste time on things that don’t matter to you- like tying your shoes. Wear what you want to and what makes you feel comfortable. Sometimes there is nothing quite like watching your favorite movie over and over or staying up as late as it takes to beat a video game with your dad. It’s ok to disagree about something or get mad at someone, but get over it, that’s life. Move on and have fun. Animals rock- never hurt them, always love them. Be curious- read, ask questions, try new things. Have fun- be loud, laugh, act silly, tell jokes, but not at the expense of someone else. Hug your mom or your best friend even when others around you might not think it’s cool because loving others is always cool.

In Memory of David James "DJ" Preece- April 11, 2003- September 12, 2015 
#IamDJ  #oneorangemarble 

Tuesday, November 17, 2015

The Light Switch

I cannot figure out this disease.  Alzheimer’s keeps me guessing.  Just when I think that all I will hear from my mom is about two words, and that she has lost so much weight that we may be near the end, things change. Now she won’t stop talking. Granted, you cannot understand everything she is saying, but she is actually able to communicate, and we can understand a lot of what she is saying.

A few weeks ago I was at the point again where I was dreading the visits. My 12-year-old son had unexpectantly lost his best friend and the condition that my mom was in had me worried that I was going to lose her next.  I wasn’t ready to deal with another death. I knew that if I did lose her then, I would be in a very bad place.

As I always do, I made myself go visit. I knew that if I didn’t, I would regret it. I went in for our regular visit, and I couldn’t believe what I saw. She was a new woman. Do I mean she was completely lucid and we had in depth conversations? Of course not, but we did have conversations. I could ask her questions and she would do her best to answer them. Sometimes she would say the wrong word, but it was close enough so that I knew what she was saying. Sometimes she stuttered the word or answer over and over. But she answered me. It was as if, all this time, she had been stuck in a dark room searching for the switch that needed to be turned on and finally she found it. The room is not lighted as brightly as it used to be, but the light is enough for us to find each other.

Despite what others tried to tell me, I always knew that she still knew me. Even through the darkness, the silence, she knew me. Mom always smiled differently when I came in. Though she might say only two words, she made her best attempt to communicate her feelings by forcing out those words. And she would, randomly, say a sentence to me. It was like a flash of lightning on a pitch-black night. Things were still connecting.

And now, each time I visit her, she talks with me, answers questions. She tries to sing along with songs I play her. And she gives indications that, at times, she knows exactly what is going on.

I recently went on a trip that a friend planned. The trip dates happened to fall during her birthday. Every other year I had celebrated on her birthday, brought her gifts and treats, but I never felt like she knew what was going on. I figured celebrating her birthday this year a few days after it would not really matter. Did she even know what a birthday was? Just before I was leaving for the trip, I visited her. She was getting her hair done, and I was explaining to her the situation about not being there for her birthday.  Mom sulked and said, “I am going to be so lonely.” At first I did not understand exactly what she had said, but then Chinel, who was doing her hair, confirmed it. She understood. Our mouths dropped open. I explained that I would celebrate her birthday after I got back and promised to bring her treats and something fancy. That was enough to perk her up.

After her hair appointment, Chinel was telling her goodbye, gave her a hug and kiss, and told her she loved her and would see her soon. After their goodbye, as I turned her wheelchair, she tried to turn her head and yelled, “Hey! Thanks for coming.” I let Chinel know what she said and we both broke into tears.

I know this gift of her communication and understanding could be fleeting, but I am so very grateful. Grateful that she still knows me and is excited when I come to see her. I am excited that I still have a chance to interact with her with some level of real understanding and that she knows how much I love her. And even when that switch can no longer be turned on, when that light flickers out, I will be grateful for the times that I saw the light shine.

Thursday, September 24, 2015

In Memory...

On September 12, 2015, my son, Jacob, lost his best friend, DJ. He was only 12 years old. His death was sudden, unexpected. At one point I was asking, “Why DJ? Why this family? Why my son?” We don’t have answers yet to explain why this physically happened, why his body couldn’t hold on, and we may never get this answer. Although this information might help bring some closure, some answers about what was going on in DJ’s body, that reason won’t help ease the grief and sadness we all feel, or fill the huge hole we now have without him in our lives.

DJ was my son’s best friend, our neighbor, our friend. Although he was small in stature, he was larger than life.  DJ was kind, loyal, smart, charismatic, and a ton of fun to be around.

DJ and Jacob met in first grade. They sat right next to each other in class, not knowing they were neighbors. They didn’t ride the same bus because DJ went to before and after school care and somehow they never saw each other outside. We can thank the snowstorm of 2010 for causing the two of them to discover that they had a friend just next door.

Once they realized that they lived next door to each other, they became fast friends. Over the years there have been sleepovers, bike riding, Boy Scouts, parties, annual trips to the State Fair together, dinners out, movies, lots of video games and Legos, trick or treating together on Halloween, and even a few arguments. Having a disagreement once in a while is normal for friends, but Jacob and DJ were more than friends. These two were more like brothers.

I remember one time when Jacob and DJ were fighting over something, Jacob came home from DJ’s house frustrated, but not five minutes later, DJ was peeking in and knocking at our back door. When I asked if they were over whatever they were arguing about, DJ said, “Yeah. Sometimes we get mad, but that’s normal. We are like brothers. Brothers fight sometimes.” I can still hear DJ ‘s voice in my head. He pronounced brothers more like “brovers” and despite the spin DJ gave the word, he was right. His words of wisdom rang true about those two. They were like brothers and always will be.

DJ was an authentic human being. He was always himself. Other kids his age are worried about impressing others. They have to have the newest Under Armour hoodie or the cool socks. DJ could have cared less about those things. He rocked his sweatpants, often a little too short for him, and wore his character t-shirts like a boss. He wasn’t looking to impress anyone; he was wearing what he liked, what was comfortable, and what made him feel good.

DJ usually wore some sort of Velcro tennis shoes. At first, when he was younger, it was because he didn’t know how to tie his shoes, but even when DJ learned to tie his shoes, he still wore those Velcro shoes. When we asked him about that he said, “Why would I want to waste time tying my shoes? I have better things to do with my time.” Touché.

All of that extra time he gained from not tying his shoes did not go to homework or cleaning his room. I can’t tell you how many times Jacob would tell me that DJ was grounded because he didn’t clean his room or didn’t turn his homework in, even though he had done it. Then there was the time that he wasn’t doing so well in Spelling. DJ was smart, really smart, but early on he decided what he thought was important and what wasn’t. Tying your shoes wasn’t important and neither was learning the correct way to spell words. When he was released from being grounded, I would give him a mom spiel about doing his homework or studying his spelling words, but DJ scoffed at my advice.  He said, “It’s annoying. That’s what spell check is for!”

And it’s true that DJ did know what was important to him, and being friends with Jacob was very important. DJ was a loyal friend to Jacob. If those two were apart for longer than they liked, they would see each other, huge smiles on their faces, yell each other’s names and hug. They didn’t care who was around. They didn’t care what social stigmas told them. They were just so happy to be back together. Best friends, brothers united.

Jacob and DJ sometimes seemed young for their age to others, but they didn’t care, because they sure knew how to have fun together.  At 12 years old, they were still playing Legos together, having Nerf wars, playing video games, and battling whatever army and creatures their imaginations could come up with. I would see them outside, play swords swinging, taking down their enemies. Then they would come back in searching for bow staffs and other weapons they could add to their arsenal and head back out again to finally slay the dragon, win the war, save humanity. But don’t get me wrong; they were 12-year-old boys and there was talk, once in a while, about girls.

I would sometimes ask DJ, “Who is your girlfriend?” or “Any cute girls in your class?” mainly just to get a rise out of him. Most times he would get embarrassed, shake his head, cover his face, and do his DJ yell. But one time I asked him the same question and Jacob said, “Yes! Yes! Tell her DJ. There is a girl he likes and she likes him too!” This girl will remain nameless, but I am sure that DJ captivated her with his charm, just as he did us.

Despite being only 12 years old, DJ was wise beyond his years. He had impeccable manners. He addressed me and my husband as Mr. and Mrs. Godby and rarely ever missed a “please” and “thank you.” Good parenting there.  But one of my favorite things about DJ was his quick wit. He was that guy who could come right back at you with a witty response. You know those things that you wished you had thought of saying at the time that would have been so funny? Well, DJ didn’t miss a beat, slaying us with a perfect quip with perfect timing. There wasn’t a time that DJ was around that he wouldn’t make us laugh. Whether it was his perfectly timed comments, randomly busting a move in our kitchen, or treating us to a DJism, DJ just being DJ brought laughter and joy to our home.

We are all going to miss that guy. I will miss seeing him walk around our house wearing only one sock, not knowing or caring where the other one was. I’ll miss turning around while watching a TV show, only to see DJ standing there entranced with whatever was on, Nerf gun dangling in his hand.  No more DJ leaving his food out so he could go back to take a bite of it whenever he wanted, because he ate like a mouse. No more waiting up for Jacob on Friday night because he had gone to El Rodeo for a late night dinner with DJ’s family. I will miss having DJ show up at our door wanting to play with Jacob or watching Jacob run across the lawn to go play with his buddy.  DJ won’t be showing up at our house early on Halloween to go trick or treating before I can even get the kids in their costumes. I will miss checking in on the boys while they are sleeping, quietly dreaming the night away. And I will no longer get to hear about their plans for the future; Halloween costumes, trips they would be taking, jobs they thought would be cool to have, and their dreams of going to the same college and being roommates.

DJ and Jacob understood each other. They took each other for who they were- faults, idiosyncrasies, dreams, fears, uncombed hair- all of it. Those two understood that these parts made up the whole of who they were as individuals and they loved each other just as they were.

Losing DJ is beyond sad, it is devastating for us all. It just doesn’t seem right. Why should this family lose their son so soon? Why does Jacob have to lose his best friend at only 12 years old? What has the world lost? The world, our world, was a better place with him in it. Why take him away? There are no good answers to these questions.  And there is no changing the outcome. We simply have to accept these new lives that have been forced on us – lives without DJ.

Jason and I have told Jacob how lucky he is to have had a friend like DJ. We told him that some people search their entire lives to have a relationship like Jacob had with DJ and they never find it.  Jacob is lucky, we all are lucky, to have known DJ.

And so, although his wings were ready, our hearts were not. We will treasure the time we had with DJ and we will continue to remember and cherish our memories with him. And although Jacob lost his best friend, his brother, he knew what it was like to have a true friend, loyal to the end.  Godspeed DJ, our son, brother, and friend, watch over us. We love you.

In memory of David James "DJ" Preece ~ April 11, 2003- September 12, 2015